Every day I experience life in the world of healthcare IT, supporting 3000 doctors, 18000 faculty, and 3 million patients. In this blog I record my experiences with infrastructure, applications, policies, management, and governance as well as muse on such topics such as reducing our carbon footprint, standardizing data in healthcare, and living life to its fullest.

Saturday, March 9, 2013

Serving as Healthcare Navigator for my Father

On Friday at noon, I received a call from my father's cardiologist that I should fly to Los Angeles urgently - "your father has had his third heart attack, his heart is pumping at half its usual volume, and the combination of multiple medical problems requires rapid decision making."

20 inches of snow had fallen in Boston on Friday morning, delaying and canceling many flights.

The beginning of Spring break meant that just about every Friday flight was oversold to reveling college students.

I was able to get a Jet Blue flight scheduled for 7pm, delayed to 9pm. At the airport, I went standby and flew on the 5:30pm, leaving at 7pm.

Once in California, I rented a car and drove to the ICU, arriving at midnight local time, 3am Boston time. My father's vital signs were stable but there was much to do.

Given everything that happened in 2012 - Kathy's breast cancer, my mother's broken hip, and health issues with my father in law, I declared a family goal to have all wills, trusts, powers of attorney, healthcare proxies, and an open discussion of care preferences done by the first week of March. My parents and I worked through a review of their legal documents, an inventory of their preferences, and an accounting of their assets in mid-February so we were well prepared for Friday's events.

At the moment, I'm in the ICU watching the rise and fall of my father's chest as he breathes on his own after a night on a BPAP machine. I've taken my mother home to rest. I'm holding my father's hands whenever he becomes agitated. He knows I am here but cannot converse. Today would have been too late to have discussions about his care preferences.

Decisions we've just made are to treat my father per the preferences he wanted - no chest compressions, no intubation, and no pressors.

Difficult discussions our family has had this year included:

Do you want to live at home as long as possible including visiting home care or hospice nurses?

Do you want to be buried or cremated? A funeral or memorial service?

Where do you want to live after the death of a spouse?

Now that I'm living through the implementation of these decisions, hour by hour, I am so thankful we had the discussions, created the documents, and shared our work with appropriate lawyers, accountants, and family.

As I sit here, his vital signs are stable, his drips have been stopped, and he is comfortable.

I've worked with a remarkable care team - my mother, a hospitalist, an intensivist, a cardiologist, and nurses to implement our jointly developed care plan.

It's hard to know what the days ahead will bring, but I will sit by father's side, following his wishes, ensuring that he knows that his family loves and supports him. I will ensure he has no pain and no fear. I will celebrate the gifts he has given me and others. I'm reading him notes from my wife and daughter.

It's an awkward time to post a blog, but if my journey over the next several days with my father encourages others to prepare for these events (this website is very helpful), my father's life will have made an even greater impact. Making a difference is a great legacy.

10 comments:

John - know that those of us who faithfully follow your blog and life want you to know how much your sharing means to all of us. Our thoughts and prayers are with you. You and your family are well prepared if one can be really prepared for major health problems. You have had quite a year!

Best wishes to you and your family, John. I went through this experience four years ago with my dad, and the preparations he and my mom had made were a solace for all of us, as was the professionalism of the attending who made our "care navigation" work that much more feasible.

You have been given the gift of knowledge to help your father and family prepare. I too was given that same gift to help my parents through my nursing experience. Today you are supporting your father's wishes, and there really is nothing more sacred than that.

Sending you thoughts of strength and fearlessness as you walk step by step today. Sharon Wentz, RN

John, your comments come at a productive time personally. It reminds me that as health care provider (e.g., clinical neuropsychologist), I need to not only facilitate my patients health care, but most importantly that of my family, enabling their choices, decision-making, comprehension, at the same time nurturing. Most arrive at that final goodbye with regrets, extreme sense of loss, rather than celebration of a life together!

Have followed your blog since almost the beginning and you have never written more clear concise and compassionate words. The gift and clarity that you provide across such a wide range of information and emotional topics is truly impressive. I'm sure your father is a very happy man as he makes his way to theafterlife that hopefully will be a wonderful as the onethat Dr Aden Alexander described in his book. Proofof Heaven..